I've been reading and reading about TN and the procedures for help. I don't see anything for people with TN when the 5th nerve is already damaged. I've just recently been diagnosed with TN after 26 years of misery. I'm seeing no end to this. Does anyone know something I don't. lol help...
Hi Jazzy,
I wish I had an answer for you, but just wanted to let you know that my heart goes out to you. 26 years without a diagnosis ... that's just not right.
I have more than just my Trigeminal Nerve involved because I have continuous ringing that switches from ear to ear. I think it's my 8th cranial nerve that's the culprit, though. I'm sure someone on this site will have some answers for you. If not, contact Red. He has a lot of knowledge about anything relating to TN.
Hope it's a good day for you today. :)
Take care,
Vicki
Thank you for the information! I will contact Red. About the ringing in your ears I don't know for sure that this works but I have been told that wearing ear plugs at night while you sleep helps. My right ear rings all the time but I was told it was from Gamma Knife side effect. It started after I lost my hearing in my ear. If you try it and it works let me know!
Hang in there!!
Vicki Dvorak said:
Hi Jazzy,
I wish I had an answer for you, but just wanted to let you know that my heart goes out to you. 26 years without a diagnosis ... that's just not right.
I have more than just my Trigeminal Nerve involved because I have continuous ringing that switches from ear to ear. I think it's my 8th cranial nerve that's the culprit, though. I'm sure someone on this site will have some answers for you. If not, contact Red. He has a lot of knowledge about anything relating to TN.
Hope it's a good day for you today. :)
Take care,
Vicki
Thanks, Jazzy. I'll give that a try!
Did you say you lost your hearing in one ear? I'm so sorry to hear that. :( Was it due to your TN?
Jazzy said:
Thank you for the information! I will contact Red. About the ringing in your ears I don't know for sure that this works but I have been told that wearing ear plugs at night while you sleep helps. My right ear rings all the time but I was told it was from Gamma Knife side effect. It started after I lost my hearing in my ear. If you try it and it works let me know!
Hang in there!!
Vicki Dvorak said:Hi Jazzy,
I wish I had an answer for you, but just wanted to let you know that my heart goes out to you. 26 years without a diagnosis ... that's just not right.
I have more than just my Trigeminal Nerve involved because I have continuous ringing that switches from ear to ear. I think it's my 8th cranial nerve that's the culprit, though. I'm sure someone on this site will have some answers for you. If not, contact Red. He has a lot of knowledge about anything relating to TN.
Hope it's a good day for you today. :)
Take care,
Vicki
Vivki, Yes I lost hearing in my right ear and sight in my right eye. It was side effect from Gamma Knife for removal of the rest of my cancer. Dr. told me this would happen so I figured it was a small price to pay for life. I still sing and play guitar just have to have anyone I'm playing with on my left. lol
Julie
Vicki Dvorak said:
Thanks, Jazzy. I'll give that a try!
Did you say you lost your hearing in one ear? I'm so sorry to hear that. :( Was it due to your TN?
Jazzy said:Thank you for the information! I will contact Red. About the ringing in your ears I don't know for sure that this works but I have been told that wearing ear plugs at night while you sleep helps. My right ear rings all the time but I was told it was from Gamma Knife side effect. It started after I lost my hearing in my ear. If you try it and it works let me know!
Hang in there!!
Vicki Dvorak said:Hi Jazzy,
I wish I had an answer for you, but just wanted to let you know that my heart goes out to you. 26 years without a diagnosis ... that's just not right.
I have more than just my Trigeminal Nerve involved because I have continuous ringing that switches from ear to ear. I think it's my 8th cranial nerve that's the culprit, though. I'm sure someone on this site will have some answers for you. If not, contact Red. He has a lot of knowledge about anything relating to TN.
Hope it's a good day for you today. :)
Take care,
Vicki
You’ve been through so much, Jazxy. I’m so inspired by your positive attitude! 
What do you mean 5th and 6th nerves severed.
Pamela Olson said:
What do you mean 5th and 6th nerves severed.
Pam,
During my first brain surgery for removal of Chondrosarcoma they cut/severed my 5th and 6th nerves. Which left me with no feelings on the right side of my face/head/gums/tongue and paralyzed my right eye (r eye stays in one place, doesn't move at all). Hope that answers your question. :o)
Julie
Vicki Dvorak said:
You've been through so much, Jazxy. I'm so inspired by your positive attitude! :)VickiI've been reading some other people's "lists" of what they want to do after they get treatment for TN. I have always said why put off to tomorrow for what you can do today. 5 days after my 2nd brain surgery I was out on the track walking/running. Yes, it caused me head pain but the energy I got from it was all worth it. I have never put anything I want to do off until I feel better. I don't understand that way of being. I think the first way to recovery is being positive and not feeling sorry for yourself. Never stop living for what might happen.
Julie
Hi Jazzy, it doens't look like your last couple of comments have shown up. Feel free to send me a private message and I'll definitely write back. :-)
~ Vicki
Jazzy said:
Vicki Dvorak said:You've been through so much, Jazxy. I'm so inspired by your positive attitude! :)VickiI've been reading some other people's "lists" of what they want to do after they get treatment for TN. I have always said why put off to tomorrow for what you can do today. 5 days after my 2nd brain surgery I was out on the track walking/running. Yes, it caused me head pain but the energy I got from it was all worth it. I have never put anything I want to do off until I feel better. I don't understand that way of being. I think the first way to recovery is being positive and not feeling sorry for yourself. Never stop living for what might happen.
Julie
Thank you for the answer Jazzy. Mayo wants to strip the TN nerve but not so sure I want to go through with it. Had one gamma knife and MVD in 2009. I have partial numbness and pain, I can't imagine having total numbness.
Thanks for posting Jazzy I didn't know Gamma can cause ear ringing. I did have the procedure, and I did notice increased ringing in my ears since then. Thought it was the TN though... I blame it for every thing. Hah!! :)
The way I understand it is... Gamma knife caused me to loose my hearing. The ringing is from who knows!! The things in life we deal with.